DS tells me I have used sink or swim and I'm wrong

[ASDMumof2]

Background is both kids have ASD. They're 22 and 20 and at home. I'm on my own - DH died when kids were young.
I work more than full time running a business. I look after my 84yo mum one day a week and one evening - she is unable to fet out I dont visit dye to mobility issues and I'm pretty beaten up now.

The kids ASD means my house is a wreck. My DS and I had got it into some semblence of order before my DD moved back 9m ago. Now we have no lounge - it's full of my DDs stuff and has hence become a dumping ground.

My DS room is on the top floor - I rarely go up there, but it's a mess.

My DD has 2 rooms. Her bedroom is a mess. Her second room is full and her stuff is in the hallway.

My 2 rooms are now getting filled with stuff noone else can fit in their rooms.

The boiler pump went last year - we had no central heating last winter cos I couldn't get anyone cos of the state of the house. I've booked an appointment next Friday and left strict instructions to me DD to clear her floors so we can get into her rooms and sort them out.

I got back from my mums last night and my DD had done nothing. My DS talked to me - he's very intelligent. He mentioned I didn't get him up for work (in his words I did the dirty on him) and I said, I called you when I woke up. I'd set my alarm for 8am one day to get an extra hour sleep. I reminded him that I had until then got up every day early to Di his lunch and make him a coffee, but as he hadn't eaten his lunch from the day before, I decided I'd have an extra hours sleep am I wrong? He said OK I get that, but I couldn't go to work that day.

He then said his sister had said she feels unsupported. Her rooms need sorting but I'm either working or at grandma's.

I said well you're both adults, I can't do everything for you forever. You have to sort yourselves out. We talked. I said it's sink or swim. He told me I had chosen an unsafe learning method and how it's completely wrong to set someone up for potential failure (in fact, in the analogy, it's setting someone up for the risk of death). It really upset me because he's right. I just don't know what else I can actually do.

I bought my DD a physical alarm clock cos she uses her phone to help her sleep which means it's often dead in the morning so her alarm doesn't work, but she's not using it so often sleeps until 4pm or later - she has chronic fatigue. So if I don't get her up it's on me even if I have a full day or work or I'm at a clients site, there's an expectation I should get her up. The issue she's raising is that if she's not up she can't do anything. But it's crap. She was up when I left to go to my mums yesterday but still did nothing.

My DD is completely fd up. She has anxiety like you wouldn't believe the psychiatrist put her on meds but now they're not working. I've tried taking her for hypnotherapy. She expects me to note all her medical appointments and I can't always do that. She isn't putting them in her diary.

I hate my DH for leaving me with this life.

Noone at work would suspect anything. I get stuff done, I'm highly successful and I earn a decent income. In fact I give money to my DD as shes incapable of work - she was turned down for PIP but she needs it - and i give my DS money to supplement his income. He saves like noones business so I'm OK with that. My DD spends every penny she gets.

Am I wrong to use sink or swim? If I am and I think I am, what more can I do? I am not depressed, I am though getting to the end of my tether.

Well I hadn't heard of that....but I've looked it up and yes, that sounds like it. She then has probs sleeping and fautly frequently pulls all nighters folliwed by 24hours of sleep. I'll make sure we check with the GP. Thank you x

Gp’s don’t know much about it. My dd17 has it as the moment. May take a year or so to fully recover.

Hi @SoShallINever thanks for your reply.

My DD had that support when she moved to the Isle of Man. She came home because her injury meant she couldn't work anymore which meant I'd need to find £4k pcm to keep her there instead of the £2k pcm I was supplementing her with.

Here in England the GP has referred her for ADHD assessment and has carried out a medicine review because GPs cant prescribe the meds she's on and sge needs them on repeat. They initially wanted to wean her off them, but decided otherwise for the time being because at least they take the edge off her depression.

When I speak to SS I'll ask about OT support. I think she needs an advocate too. Together they could give her some help. I also wondered about paying for a coach for her, but the hypnotherapist said she was resisting him, yet the first session she had with him was brilliant :(

I also agree with your point on me moving out - sometimes when things are so overwhelming and yet you need to stay on track, getting some respite seems the logical next step, that was why I was looking for a bolt hole.

@UnbeatenMum thanks for your suggestions, tgeyre really helpful

You are right my DS is reasonably adjusted if opinionated 🙄

I will def look at getting my DD help. The challenge will be her anxiety in trusting someone to help but there's no harm in trying every avenue.

@BoohooWoohoo we had a skip a few weeks ago. She ditched loads of stuff. Her clothes went to charity but stuff she'd kept from being a kid went. Her dolls houses I found homes for :)

The reason she has so much stuff is she lived on her own in a 2 bed property for 2 years. It's mainly what I would say are personal belongings and clutter. She cleared her 2nd room tiday and all her stuff from tge lounge is now in her room. I've booked a tip run for tomorrow so I take all the stuff she doesn't want there. My DS has also been sitting his room out and has told me his stuff for the tip will be loaded in my car before ge goes to work.

It has been so helpful coming on here to get everyone's views on what to do.

Thank you to all the MNrs who replied.🫶 😁

Thank you! Yes we'll see his tomorrow and then longer term pan out. 🤞🤞🤞

I am feeling optimistic.

Sounds like progress is being made @ASDMumof2 , you sound like a lovely caring mum . I sometimes think it’s very difficult for people who have normal children that grow up , go to uni , get a job etc to understand what it is like for those of us that don’t have completely normal , fully functioning children .

In your shoes I'd throw money at this problem.

I'd be looking to use the money to solve the problem not hide the problem. Your current use of your financial resources keeps all 3 of you in this dynamic.

I'd get some movers in and I'd move all DDs to storage apart from the bare minimum just to get the boiler fixed.

Then I'd get a professional to go through her stuff with her. In fact I'd guess the mess is making it worse for everyone so that's where the money needs to go at not to the adults.

I'd also look at them both moving into rented accommodation, possibly together. For your own mental health there needs to be changes. As you say they are both adults so they need to start adulting.

We have w ensuite shower rooms, so my DS has one and I have the other.

My DD is happy having the proper bathroom, so no I didn't want to swap rooms.

And yes my mum needs to move nearer to me - I did suggest this initially when I saw where the place was that my sister had found for her, but she said she wanted to live nearer my sister. So she got what she rues miving and saying she wanted to be there because she hates it. She is always crying and says she should have listened to me.

I don't know why she won't get a scooter. It would change her life. I wonder if she's worried she'll hit someone. I don't know, but she's always grateful for any help, bless her.

Get your kids on pip, especially your daughter. They need proper support and without it theyre not going to swim they'll drown.

Ive personally used a company to help me claim PIP, I'm happy to recommend but i dont want anyone to think its an add as I have no connection. They do charge but have free support for some people.

You all need some help. Just like you've got to this stage and you dont know what to do any more - your kids are also stuck too.

Work with them and together come up with solutions that work. Teach them their limitations and how to get round them. Help them advocate for themselves - starting with money they deserve in PIP.

Pick up all their stuff and dump onto their bedrooms. Tell them the sitting room is for sitting in not buried under their stuff. Tell both DC they are adults now and you will not be waking them up and running around after them any more. You have bought an alarm clock for them and show them how to use it then step back. If they then chose not to use it that's on them. I'd tell your DD to sort herself out and get to work. I'd refuse to give either DC money. If you stop funding her she will realise she needs to earn money for herself or will go without things. Your Mum needs you.

@inloveandmarried great idea. My DD was saying she needs to set up her Google nest then she'll be fine. Hoping she does that now she's found it or rather seen mine 😉

I love how you can talk on Alexa - I havent tried but I think you can do the same with google nests via duo, so its a great tip. Thanks.

Thank you, I will do that. 💕

They've both been great today. I think the house will be spik abd span by Friday, I just hope they then keep it up and I could then get a cleaner ....

My sister is all tough love until it comes to her own kids, so she's said the same to me. But they are not like standard kids, they have disabilities, so it's not quite so straight forward. And I feel I fail them constantly because I don't understand what they're going through and I only have the capacity to help when I'm not working or doing house stuff or with my mum.

My DD would have carried on working if she wasn't injured - she does help me a few hours a week doing analyst work but not during the normal working day, obvs. The issue is she couldn't and still can't do the work she did. She recently started a BTech and has been working on that but as she's awake for so few hours, her progress is slow. I'm hoping once she's diagnosed she'll get meds that help her fatigue 🤞

She def wants to work btw. She isn't lazy she's disabled :( She has been suicidal because of her fatigue anxiety and depression hence how she was referred to a psychiatrist. Thankfully she's no longer suicidal, so I'm hopeful she will get her health on track.

My DS has already told me he'll be up at 7am and load my car with things for tge tip before he goes to work. He has a set amount of tasks to do every day as part of the build he's working on,so he's quite organised except for the one day he hung over my head when his phone died and I didnt wake him up cos I was having an extra hours sleep since his lunch was already made...

I honestly feel so much better after all the positive messages and advice I've received.

Thanks.

I voted YABU as I think you've fallen into the trap of enabling poor behaviour from your kids under the guise of their ASD.

I'm sure their ASD causes difficulties but from what you've said they have capabilities in most areas, can work etc. So they need to develop coping strategies that doesn't involve mum doing it for them.

@Checkcurtains Yes I could have done better on ocassion, but that doesn't mean we haven't spoken before. The post was following my DSs revelation that I wasnt doing enough to help (his DSister) not that I was doing too much to help her. I know she struggles, she has self harmed many times. I honestly don't think anyone can really judge someone with disabilities and ASD is hard to understand even if you have ASD let alone if you then have a phtsical injury that's painful and CFs plus (probably) ADHD!

His complaint about me not getting him up was 1 day out if the last 4 years when unbeknown to me, his phone died and I decided to have a lie in. I've never had to wake him up before! I do have to wake his sister up as she has chronic fatigue.

Thanks for your response, but honestly unless you've been there it's hard to walk in my shoes. I really am a sink or swim type mentality, so my kids don't get things handed to them, I promise you.

They need to get jobs (if they haven’t already) and move out.

Pls skip through my updates. Your comment is sadly unhelpful :(

But I think we're on our way. Just getting DD up now to sort through her stuff ready for the tip run.

Thanks @viques. I will keep on her case about the volume of possessions - I think it's her ASD - she collects stuff. When I'm with her she can't buy anything it's when she's out with friends.

You’re doing great to have got the ball rolling. Your update is pleasing because you have clearly started to prioritise yourself. It’s so important that your well-being is looked after because then you can be there for your kids. I would be wary to move out completely in case the kids trash the house but having your own sanctuary for your sanity is so important too. Now you’re making me want my own little caravan haha!

Thank you!

We are a whole hour ahead of deadline and my DDs room is clear of stuff for the tip. I've been working so I have not helped her but I did check she was OK.

I am planning on converting my old SUV into a micro camper, then I really could bugger off at the drop of a hat 🤣 I def think a caravan is the way to go for longer stays away though and to save my neck cos I'm not putting a pop top on the car.

My mates bought 1/4 of a property in Portugal 2 years ago. They each get 13 weeks and annually they get a different 14 weeks. The resort is all like this so the same people are likely to be there when you are so it's enabled them to make so good friends already. I think caravans could be sold like that too. How much more cost effective would that be?! Maybe £5k each to buy, then £1k each annually plus utilities and it could be arranged so everyone gets 2 weeks use during school holidays. I think I've just started a new business model 🤣🤣🤣

Well done on last 2 days. Sounds like a fantastic start.
Has your DD tried being on melatonin? It was a life changer for my DD who went through very similar. They first tried her on anti- depressants but she felt worse on them, but the melatonin sorted her sleep patterns out and that's when we saw a major improvement. Nothing worse than being unable to sleep at night and too much time to overthink this - no wonder she was so anxious and depressed.

I do think you would be wise once things have settled down to think more long term about how your DS and DD are going to cope on their own and start pushing them towards this. I'm only saying as my mum still has my brother (mid 50's) living with her. He's not really capable of living on his own but he has ruined my mum's life over the last 20 years when she should have been getting on with her life. There are things that should have been set up for him to live independently 20 -25 years ago when it was obvious he was always going to need some support (not lots, but help with managing paperwork etc).
For your sanity, setting them up to be independent is the kindest thing you can do. I love my brother but I have no idea how he will cope when my mum is gone - he's only just leant how to do the food shopping which I had to basically teach him by going with him a few times.

My brother almost certainly has ASD but point blank refuses to consider a diagnosis ( GP has tried suggesting he goes) but he has other issues as well but is very intelligent academically.
I think my mum's life would have been very different had mum and dad accepted his issues and put things in place for him to cope long term living independently. I really hope you can do so with your kids for all 3 of your sakes.

@ArseInTheCoOpWindow in terms of your mum's reluctance to get a scooter could you look at shops that hire them. She could try it for the day and might be a complete convert.

Hi @whathaveiforgottentoday I tried her on a H&B melatonin concoction at one stage and Rescue both of which were OK and helped, but as she got older they just had no effect, so thanks, I'll make sure we mention that to the Dr's.

So glad it helped your DD x